JaimeS
Senior Member (Voting Rights)
That's why I've never understood why they haven't got behind pacing as a management strategy. It seems like the most obvious solution. Unless they did originally, and found that it didn't cure people, so assumed that they were booming and busting in secret?
I just finished reading through the data on Adaptive Pacing, CBT, GET & Specialist Medical Care for CFS: A Cost-Effectiveness Study or whatever. It's original PACE authors.
Here is my re-imagining of their really, really poorly-done data table.

You'll notice that, judging by how they chose to measure 'efficacy', pacing doesn't look so good. And specialist medical care looks at first glance to be worst of all.
But this is deceptive.
'Getting off of or onto benefits' is a really, really poor indicator of wellness, because there is the unspoken additional variable of access and the perception of access.
For example, take a look at how many people got onto state-sponsored illness & disability benefits from CBT and GET groups.
It's very low in comparison to pacing and specialised medical care.
Now, take a look at how many people chose to get on income protection or private insurance in the CBT or GET groups and compare that to pacing and specialised medical care. The numbers for GET and CBT nearly doubled!
To me, this doesn't show that people who went through GET or CBT didn't need benefits -- it shows me that their CBT & GET experience discouraged them from believing their government believed and would help them. It impacted their perception of access.
So they didn't even try.
Instead, if they could afford it, they went for private insurance in overwhelming numbers (percentage-wise).
So, we have three factors here, and two go unacknowledged:
- wellness
- access
- perception of access
- ME patients are somewhat likely to rely on benefits over time (because all groups increase a little over time).
- Pacing provides the best combination of access and wellness
- CBT provides no benefit to wellness and also decreases access and/or perception of access
- GET worsens wellness and also decreases access and/or perception of access
- 'No treatment' worsens wellness but has the same access and perception of access as pacing
[Edit: in further support of this rather depressing theory, there was a significant disparity in who CBT and GET folk turned to in order to attain disability as compared to APT and SMC.]
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